Life, Autism, Disability, and More

Tag Archives: school

schoolhouse - image by ren - morguefile.comThe gods of special needs kids and parents are capricious.

Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?

This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?

We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)

Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.

Score.

Things were okay after that.

We went home and chilled out. He watched TV and played with some of his birthday gifts.

Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?

I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)

We drove to HEB – he was happy.

We went into HEB – he was happy.

We shopped through most of the store – he was happy.

We walked into the produce area and ran into…his teacher from this past year.

The happy was gone.

Simon saw her, he touched her arm, she said hi to him.

It was all over.

He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.

I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.

It was a very, very unsuccessful shopping trip.

So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.) 

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World's Best Mother StatueAt the thrift store, I spotted it.

One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.

But this one. This one was for me:
World’s Best Mother.

I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.

“What does that say?” She asked.

“World’s Best Mother.” I picked it up off the counter and showed it to her.

And I bought it.

For myself.

 

I don’t know about your house, but in our house, summer is rough. Simon *loves* school.

He loves the people. He loves the routine. He loves the activities.

Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).

He spent the whole Monday talking about ESY, asking about it, telling us when it was.

Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.

Math.
4 x 4 x 3 = 36 hours.

Over nine weeks.

I’m going into the summer prepared and hopeful.

The World’s Best Mother award is part of those preparations.

Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.

But we shouldn’t.

Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.

We’re the World’s Best Mothers.

Download Me:
Worlds Best Mother Award

 


School started on Monday!

Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.

Monday was good.

Tuesday was good.

Wednesday. Well. Wednesday was.

He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.

Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)

“Do you want to go run errands?” I asked him.

Errands? Shopping?

Oh, yeah, he was all in.

We went to the thrift store across the way.

And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.

Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.

He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.

He screamed more. He cried, tears streaming down his face.

Time to leave.

We got to the counter.

We had to wait.

Simon really, really, really did not want to wait.

He escalated in decibels, and he added in this little shrieking thing he does.

Now, I’m going to go back a bit.

When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.

I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).

He began slamming his hands down on the counter, shrieking.

I pulled his hands back, told him not to do it, and listened to him getting louder.

I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.

No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?

I was going to try to wait it out.

I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.

I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.

I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.

I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.

I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”


april 8Simon had a bad morning. Which seems fair because I had a bad morning, too. I seem to have picked up the stomach flu that’s going around, and I woke up with a serious headache, severe nausea, a stuffed-up nose, and a sore throat. Fun!

But still more fun than Simon had.

Apparently, starting at about 8 a.m., he began throwing a fit at school, demanding that his teacher call us because we would “take him to the zoo.” He told her to “call mom and dad” and that “mom will take you to zoo” and “dad will take you to the zoo.”

Uh. No. Nope. There had been no zoo discussions. No mentions of the zoo. No idea where the zoo concept came from.

But the argument about the zoo lasted.

I was still asleep and trying to feel better when the teacher tried to call me, so I didn’t hear my phone, but she called Patrick next, and he answered. Then he had to get on the phone and explain to Simon that no, no, we were not going to pick him up from school, and he was not going to the zoo.

That phone call happened at 9:30.

An hour and a half after Simon started wanting to go to the zoo.

At 10:15, he finally calmed down.

Let that sink in. It was over two hours of Simon freaking out because he got it into his head that we were going to take him to the zoo.

Wow.

Just wow.

His teacher sent home an ABC page. (For those not in the know, ABC = Antecedent, Behavior, and Consequence. In other words, what happened to cause the behavior, what behavior was it, and then what happened because of his behavior.) The page goes into great detail about everything she tried to calm him down. It includes instructions, prompts, redirection, social stories, counting, alternative behavior techniques, squeezing a ball, and breathing. That’s a lot to do, especially when you consider that he was screaming at her and then getting physically aggressive with her, including scratching and pinching her.

It spanned going from the cafeteria to the classroom to his independent work time to group work time to quiet time to independent computer work.

Again, wow.

Just wow.

And this is why we all need to be appreciative to special education teachers. Because this is what they deal with. This is what their days are like. This is what they are trying to help with.

At the same time, I also wanted to point out that while the teacher wasn’t enjoying herself, neither was Simon. That had to be a truly stressful time for him. He spent over two hours completely wound up. He couldn’t calm himself down, and he couldn’t get anyone else to do it, either.

Imagine, if you can, what it would be like to spend two hours completely freaking out. You are trying to get a message to someone, but you can’t. You are trying to get something you need, but you can’t. You are stuck, unable to communicate, unable to calm down.

He was better after that. He found a way to calm down, he had a good afternoon, and then he fell asleep on the school bus coming home. He got to go horseback riding at SIRE, and then, when he got home, he went to sleep.

But not before mentioning that he was going to “have fun” tomorrow “at the zoo.”

I told him that there would be no zoo tomorrow – he could go to the library, though, which he agreed would be a good replacement. I am thinking, though, that Sunday might be a day at the zoo now…


April 7“Nothing is easy.
Though time gets you worrying
my friend, it’s o.k.
Just take your life easy
and stop all that hurrying,
be happy my way.”

  • Jethro Tull

Some days, Jethro Tull has my back. Like today.

It really shouldn’t be too bad a day. Simon has gymnastics, which he *loves* and looks forward to.

But this afternoon, I also got a phone call that Simon has been doing his “twitch” all throughout school.

Let me explain it.

Simon is on medications, and some of them, in the past, have caused twitches or other involuntary (and unvoluntary) movements. Two years ago, we had him go in for testing to see if he was prone to seizures or having seizures that we weren’t able to see or document. They flashed lights, made him blow on a little wind-mill toy to make it spin, and did all sorts of stuff to see if they could trigger something.

Nothing.

We managed to get in and see a neurologist to review the results of the testing, and he was extremely relaxed about the whole thing. He told us that what he was seeing, and what we were telling him, sounded like tics and that they would likely come and go over time. There didn’t seem to be any abnormal brain activity, and it was “normal” for some children with autism to have those types of movements. In fact, after reviewing the meds that Simon was taking, he told us that the meds should have helped *stop* any tics or twitches, as opposed to causing them.

Sound good, right?

But then Simon started a new one. He seemed to only do it every once in a while, and there was some sort of pre-cursor to it.

The twitch was a serious one, at least from an outsider’s view. Simon would tense his body, then twitch, starting at his head, but it looked like it ran through him. After he twitched, he would often say “hi” or “hi Mom” or “hi Dad” or something.

The thing is, if you asked if he was okay, he could answer yes immediately, and if you told him to stop, he would. And he normally only did it when he was mad or upset or if it was time for bed. (I have no idea why going to bed caused it…but, hey, it’s Simon. Whatever works.)

Part of me still thinks it’s just a major stim. Something he’s doing because it feels good.

But then his teacher called and said he had been doing it all day in school. Not just a few times, but over and over again. She had taken him to the nurse who had checked his eyes, checked his grip, all that kind of good stuff, and he was fine from a physical stand point.

But…

But he kept doing it.

He’s on the bus now, coming home, and I’ll be keeping a close eye on him before, during, and after gymnastics, but I can feel the stress invading my body as I get ready for it. Get ready for careful watching. Get ready for worrying if I do notice it. Get ready for calling the doctor, going to the doctor, getting tests done, and, of course, even more worrying about tests and doctors.

Because, well, as Tull has said over and over again – nothing is easy.


blue skyLast week was Simon’s 12th birthday. He asked for a party at Chuck E Cheese, and he got it. Sure, his idea of a party is different than ours; all he wanted was some candles to blow out and some presents. He didn’t really want to play any of the games, and he pretty much ignored most of the guests. But he still enjoyed it. Even if, on one level, I didn’t.

Why didn’t I?

Because I knew that our families had blown him off. On one side, he didn’t even get a phone call or a card. On the other side, he got a card with a gift card in it…but it wasn’t even mailed until his birthday. To me, it’s horrible. It’s painful. How can they ignore him? How can they not even send an email when I mail them pictures of him in a little league uniform?

But here’s the thing: Simon’s sky is still blue.

What do I mean by that?

I started reading a book called “Headspace.” It’s an awesome book, if you haven’t read it yourself. At one point, the author talks about when he was in training to be a Buddhist monk. (He spent about 10 years training.) He had a problem with meditation, and one of the teachers told him a secret. Even when the sky is grey, when the clouds are dark, when a storm is brewing, there is still a blue sky above all of that. No matter what problems there are, there is still a sense of peace hovering, a blue sky we can tap into and know that everything is still good.

Simon is in the blue sky. He doesn’t know that I feel like the sky is grey, that I feel like there is a storm brewing. He doesn’t have expectations from these family members. He doesn’t get bothered. His sky is blue.

I thought about the blue sky when I read the news that broke on his birthday, too. A local town, Lake Jackson, had an issue in their school district. The teachers in the 5th grade class apparently offered “awards” to their special needs students. Awards like “Most Gullible” and “Drama King.” Horribly mean-spirited and something that should never happen.

When I read it, I thought that Simon would still have his blue sky in that situation, too. Even if we, as his parents, were upset, he wouldn’t be. He wouldn’t get the insults. He’d be happy.

But those people – the ones who wanted to give the awards, the teachers who thought it was okay – they’re the ones who would, in the end, suffer for their actions because of karma. Because they may not realize it, what’s they’re doing is teaching children that it’s okay to mock and tease people who don’t have the ability or knowledge to fight back or protect themselves. These children will someone be the caretakers of these adults. What if the adults have a stroke or get Alzheimer’s? And then these children – the ones who were taught it was okay to mock the defenseless – are now defenseless themselves? Maybe they don’t realize the impact of their actions, what it may lead to in the future.

Now, to be fair, I do feel it’s straight out wrong to mock or tease cruelly at all, these teachers don’t seem to feel that way, and perhaps the only way they can learn to be a good person is by thinking about how their actions will impact their own lives. Sad that they can’t be kind to people for the sake of kindness, but at the very least, you’d think they would be kind for their own sake.

Those teachers – they’re the storm. They’re the grey skies. They’re what bring us down, what make us worry, what upset us. But we have to remember that there are still blue skies up above them. That we can tap into that blue sky and stick with the positive. Because we can all be in the blue sky if we want to be.